Three years ago my life changed forever. A large part of me would die some 39 days later. There remains a gaping hole to this day. One that hasn’t been filled and I wonder if it is one that can never be filled.
The best way to describe it is that on this day the face hugger from Alien attached itself to my head and implanted its alien monster in me. For the next 5+ weeks I was alive but with minimal control in my life. I felt robotic, trying to respond and interpret different situations with zero experience.
Rewind to 2014. We were 5.5 months into our first pregnancy. Leigh had emerged through the morning sickness and nausea of first 3 months. She now glowed. The pregnancy was starting to suit her – really suit her in fact. Her skin colour was amazing. She had a bump which she would hold and stroke. I would rest my ear on her stomach and listen for signs of movement. Our first child, our son was in there floating around merrily.
Leigh started to become poorly. All of the signs were of regular pregnancy side-effects like reflux and rapid weight gain. Alas, this was not the case. Leigh was really very sick. Leigh’s routine midwife appointment on this date in 2014 meant I had to rush her to A&E. The prognosis was bleak – horrific even. She had developed severe pre-eclampsia and something called HELLP Syndrome. You know it’s bad if it is something you’ve never heard of… This is where a sense of loss of reality and disassociation from everything I knew to that point in my life begun.
Essentially, being pregnant was killing Leigh and killing our baby. We were informed of this fairly quickly on arrival in hospital. The best we could hope for was to hopefully mitigate the symptoms in mum and delay the need to deliver our child beyond that night when our baby was 24 weeks and 1 day.
A whirlwind of activity over the next 48 hours and we were transferred to a hospital in south London. Leigh stabilised, or so we thought. We hoped we might gain another week, 10 days for our baby to continue his growth inside mum. Every extra day = a slight increase in our baby’s chances of living. Babies born at 24 weeks have a 1-2% chance of survival. I wouldn’t know this yet.
Alas, three mornings after being rushed to hospital we were faced with Leigh having to give birth to our son. The HELLP Syndrome was attacking Leigh’s body and trying to shut it down. The consultants and doctors in charge decided they could wait no longer. To do so would risk Leigh’s life. Leigh’s body wasn’t able to cooperate to enable a natural birth. This is not surprising seeing as our son shouldn’t be born for 16 weeks. We were warned there was a high risk that he wouldn’t survive the caesarean. I wasn’t able to be in theatre when our son was delivered. On the way in the last thing Leigh said is he is called Hugo. Perfect name for our little fighter!
For the 75 minutes Leigh and our son were in surgery, I was in a operating theatre/patients room opposite the theatre. I was alone, completely and totally alone. I cried and cried and cried a lot more. People came and went from the theatre. No one told me what was going on. The sounds were my wailing, doors opening and closing and feet in corridors.
Then everything happened at once. A nurse told me Hugo was born, he was alive and breathing and had been placed in an incubator. Leigh seemed to be okay too. Simultaneously, Leigh’s mum arrived and Hugo appeared in his incubator in the corridor. He was tiny. The smallest baby I have ever seen. He little so fragile, so tiny, so beautiful, perfect and ours. I was informed he would be taken to the NICU. I had no idea what NICU was so had to ask. I escorted Leigh and her mum to the adult recovery ward where she would be monitored as she came round from the caesarean. This was easily 500 metres away from the NICU unit. In the next 24 hours I think I must have walked 25kms in those corridors checking on Hugo, reporting back to Leigh and repeat.
Hugo was in an incubator, he was connected to a ventilator to help him breathe. He also had a number of lines in his body, one for painkillers and another to feed him. He weighed 440grams – less than a tin of tomatoes. He was in a plastic bag to protect his skin. The machines that were monitoring him beeped at regular and also irregular intervals. There were two other babies in the room, also in incubators plus one empty space.
Every time you entered and exited the NICU you washed your hands to prevent the spread of bacteria. The little babies are incredibly vulnerable to infection so you wash your hands and wash them cleaner than they’ve ever been in your life! In time the soap breaks down your skin and it hurts but you continue anyway – you will do anything to protect your child.
Hugo has two nurses looking after him during each day – in twelve hour shifts. There are consultants, doctors, registrars and junior doctors in the NICU. The terminology is strange. The first real information we receive suggests that Hugo has a tough fight ahead of him. There are risks of infection, organ failure, brain bleeds and a whole host of other potential issues.
Mum too is being monitored. HELLP Syndrome has depleted her blood platelets, left her weak, badly bloated with liquid retention, potentially weakened her liver and leaves her with a stroke risk. She will remain in hospital for another 10 days.
My task is make sure Mum eats, rests, sleeps and sees her son. It is also to see Hugo when Leigh is resting and find out what I can as to his development. Eating and sleeping are way down the pecking order of importance for me. Life turns in to a dreamlike state moving from one ward to another. One set of pressures to another. One set of medical staff looking after Leigh another after Hugo. Each tasked with keeping the two people I love more than any other alive. Many of the nurses looking after Hugo are so young. They are younger than me, younger than Leigh. My god they are incredible people. They can see my struggles and they try and comfort me.
It is in these first couple of days of Hugo’s life that I read all about his chances of survival. There are a number of reports and sets of statistical data on the wall in one corridor in the NICU. I’m not sure but they might have to be visible as per NHS regulations. I will my son to be the 1-2% of those that survive. I keep this information from Leigh for months. It is the only selfish thing I will do in the time we spend in hospital. At this point Leigh is still sick, she needs hope that Hugo will survive. She needs to get better and become stronger. I won’t let there be anything that sets her back. I’m strict in making sure she rests even although this keeps her from Hugo for a precious hour here or there. I feel like a monster and hate doing this to her. The doctors tell me it is correct.
With each day Leigh gets a little better. She can grip again and start feeding herself. She can walk, very gingerly and showers. Hugo responds to her voice – he loves his mum. Leigh sings to Hugo – he loves that too! He seems to be doing okay, bar a couple of small scares. We retain hope. I start a little bit to take more notice of my surroundings. I talk to Hugo a lot. He kicks his legs and waves his arms in response. Mostly I talk nonsense and talk quietly. I tell him silly things, talk about my childhood, talk about my hopes for his life.
I also talk about football. My team Liverpool are looking like they will win the Premier League. I had watched a large number of games that season and enjoyed the style of play. They win and keep winning every game whilst we are in hospital. I only know the scores from the games but tell Hugo with enthusiasm in the hope that one day he will share my excitement.
We are made aware that Hugo is struggling. His issue is with his lungs. These are the last major organ to develop in babies. Because Hugo was so early and little his lungs were under-developed. It will be his lungs that will kill him some 35 days after he was born. Truth be told we had become adept at reading his monitors and we knew he was in trouble. Thing is we just didn’t want to believe this – it meant accepting the worst outcome.
Tragically, Hugo did die. His lungs failed and he passed away in Leigh’s arms. It marked the emergence of the metaphorical alien from my stomach. Ripping away my love, destroying the joy I found in hobbies/interests, making communication difficult, removing my hope of being a father to a living child and much more.
Even now 3 years later a lot of things I enjoyed I have issues with reconnecting with. This is especially true with football. Liverpool would ultimately fail in their bid to win the Premier League and I cannot shake this as being associated with Hugo’s life and death. Where once I was an avid fan now I can go weeks without watching any highlights and to be truthful I don’t miss it.
I have stepped back from social situations too on a number of occasions. Counselling has told me that this is in part to my experiences with Hugo but also due to something in my childhood. It is only in the last 5 months that I received this much needed support. My prognosis is that I have a highly developed ability to be self-sufficient and heightened Anticipation Anxiety. The latter is no surprise… How can you not be damaged and changed by the loss of a child?
I have some coping mechanisms now and am trying to move forwards. Thank you to Leigh, my friends and family for your patience. You have reminded me you are there and I can reach out whenever needed. I am incredibly grateful to have you in my life. I just needed to figure out a lot of things by myself because that’s who I am and it’s what I have always done. My hope is that the future contains no aliens, no more (bad) surprises and maybe a smile or two. Thank you for your unwavering support.
We love you Hugo xxx